We were tagged in a meme by Ashy were we write ten things the reader may not know about us. So in the spirit of this blog there follows ten things you may not know about ME/CFS Awareness.
I’d invite any of you who wish to share ten thing about you to do so. You might even use this idea as a basis for your Awareness blog post for May – perhaps ten things about ME/CFS your readers may not know.
Some organisations have an International ME/CFS Awareness Day (May 12), others have a week (May 11-17), others use the whole month of May.
This year, 2010, marks the 16th year of International ME/CFS Awareness Day
The International Awareness Day of May 12
“was chosen to commemorate the birth date of Florence Nightingale, the British nurse who inspired the founding of the International Red Cross. She apparently contracted a paralysing M.E./CFS-like illness in her mid-thirties, and spent the last fifty years of her life virtually bedridden. Despite her illness, Florence Nightingale managed to found the first ever School of Nursing. It is fitting that the “Lady of the Lamp” now shines as a ray of inspiration and hope to victims of M.E./CFS from the 20th and into the 21st century.” from ME Support
Tom Hennessy was central in the creation of May 12 as an International Awareness Day for ME/CFS and related Chronic Immunological and Neurological Diseases (CIND).
” I wanted to pick a spring or fall day for our “awareness/lobby” day. Most of us really sick ME patients are too ill to leave our homes most days and we just can’t go outside or on a trip to D.C. in the summer or winter months. I also wanted it to be International. May 12th is still bigger overseas than the US. …
After reading Byron Hyde’s great book on the history of Myalgic Encephalomyelitis, I decided to look up his hero’s Birthday, and lo and behold, May 12th, was Florence Nightingale’s birthday. She was the founder of the first ever school of nursing, and she fought for 35 years for justice for sick soldiers of the Crimean war. …
She contracted an M.E. type illness (thought to be brucellosis) at age 35 and she was bedridden for the next 50 years. She still had potentates and kings come to her bed for advice, and to pay her homage. She demanded that the lights be low in her room and ONLY one visitor at a time. I decided that her birthday May 12th would be the day.” taken from an interview with Tom.
The virtual lobbying group RESCIND which Tom Hennessy is connected with, continue to campaign and support May 12th as International Awareness Day for Chronic Immunological and Neurological Diseases (CIND).
BRAME is one of the original Blue Ribbon for ME/CFS campaigning groups and was formed in 1995. They highlighted the May 12th International Awareness Day at a World Medical Conference on ME/CFS in 1995 and as a result were instrumental in the campaign being adopted internationally.
In Canada May 12th is recognised by the Government as National Awareness Day for ME and FM. The National ME/FM Action Network initially lobbied government in 1994 to officially recognise the day.
The Blue Ribbon Campaign group was also formed in 2009 and is a campaign to raise awareness for ME/CFS. One of their activities this year is a Facebook event to display a blue ribbon as your avatar on May 12th 2010 http://www.facebook.com/event.php?eid=83125971055
ME/CFS and Fibromylagia share their Awareness Day of May 12th with International Nurses Day (also because of Florence Nightingale’s birthday) and Limerick Day celebrating the birthday of Edward Lear.
If you need to know why spreading awareness of ME/CFS and related conditions is important then take a look at these statistics.
Patient groups estimate in the UK alone there are around a quarter of a million people with ME/CFS . It’s especially interesting to compare this with some well known and often high profile conditions:
Motor Neurone Disease – 5,000 people in the UK
Cystic Fibrosis – over 8,500 people in the UK
HIV – more than 85,000 people in the UK
Multiple Sclerosis – 100,000 people in the UK
Parkinson’s Disease – 120,000 people in the UK